Cure CJD

Heather Larson's experiences in helping find the cure for CJD

Thoughts from 2005

Thought I’d share a brief but poignant thought from 2005.

I had meant to mark the decade anniversary better than I have so far. It was ten years since my mother’s death from CJD on November 10, 2014. I was hit by a red light runner on the 14th and haven’t been touching my laptop much since as my wrist was sprained in this car accident. With a lot going on, I haven’t had much time to marinate on what the last decade has really meant to me. That’s probably a good thing.

While cleaning and sorting today, I found a slip of paper marked 1/31/05. I know at that point thoughts were starting to sink in about my new reality without my mother and with my being saddled with a genetic question mark I hadn’t ever imagined before.

This is all it says:

It was horrible to lose my mother to CJD — until I realized I wasn’t alone. Then it was worse. (I met) my new friends, united in loss and in a world without answers.

I remember specifically thinking this after I discovered the Yahoo Group CJD Voice. This is all we had on the Internet at the time — they were called “newsgroups.” So much has changed and so many things have also stayed the same. I still often feel I am navigating a world without answers.

More reflections on the ten-year anniversary to come…

~Heather Larson


December 1, 2014 - Posted by | Uncategorized


  1. Heather, sorry to hear about your car accident. Anniversaries are very difficult indeed. I have 3 between my mother and two brothers, all whom died from GSS. I try to stay on top of the latest info, but reality is not much happens to follow daily and I would drive myself crazy looking. I too help by being involved in research, having blood drawn, spinal taps, mri’s, pet scans, neuro tests etc to help, I hope, one day to find a cure for these prion diseases.

    I guess I am trying to say, you are not alone. I truely can relate to your posts and really appreciate when I see you write a new one. I wish you comfort during the down times, and hope you keep strong and keep the faith. I have to tell myself that often as well. Keep up the good work.

    Comment by STAR | December 1, 2014

  2. Thank you! News has happened so few and far between in the past 10 years. I want to see that change! I agree, why drive ourselves crazy looking? We gotta live and enjoy life!

    Comment by CureCJD_Heather Larson | December 1, 2014

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